Thursday, September 1, 2011

Portrait of Congenital Anosmia: The Teenage Years

A person born without a sense of smell has a condition called congenital anosmia. Unlike acquired anosmia, which occurs due to head injury or upper respiratory issues, there are no reference points for smell for the congenital anosmic, no Proustian memories to resurrect. Smell culture is learned by observing others which can be particularly awkward for teenagers who are in a more self-conscious phase of life. 

39-year-old Pauline Lipscomb didn't recognize her congenital anosmia until she was a teenager, "Believe it or not, I didn’t know I couldn’t smell until I was 14 years old. I was dancing with a boy at a school dance who said to me “I used my Mom’s strawberry shampoo. I’m not wearing perfume.” I told him it smelled fine to me, but really, in my head, I was thinking I can’t smell anything; I really can’t smell a thing! I never discussed this with my parents though, I’m not sure why. I was probably afraid they would take me to the doctor... Not having your sense of smell isn’t something you notice for a long time I guess, compared to other senses such as hearing and sight.

26-year-old Marie Sherman is a member of the Congenital Anosmia group on Facebook. On August 10th she shared a poem she discovered while digging through some old high school papers. The poem was part of an English assignment that required the use of "I Am" as the format for expression. The result is precious and insightful as it beautifully illustrates what it is like to be a teenager with congenital anosmia. Ms. Sherman read the poem aloud to her class who were undoubtedly moved by the revelation and ensuing emotional recitation which even Ms. Sherman did not expect.

I Am
By Marie Sherman

I am the quiet one who cannot smell.
I wonder what the world is like, full of smells.
I hear people call me weird when they find out the truth about me.
I see myself sometimes as "that weird girl who cannot smell."
I want to be able to smell everything no matter how disgusting something smells.
I am the quiet one who cannot smell.

I pretend to be able to smell to fit in.
I feel untrue to myself every time I do that.
I touch a nerve in myself because I am not being true to myself.
I worry that when I am on my own my life will be in danger because I can't smell.
I cry because I am not showing everyone the true me.
I am the quiet one who cannot smell.

I understand no one is perfect.
I say that everyone seeks acceptance.
I dream that everyone will be accepted no matter what.
I try to treat people the way I want to be treated.
I hope everyone will feel acceptance.
I am the quiet one who cannot smell.

The unpleasant smells that Ms. Sherman refers to in her poem also include dangerous smells like spoiled food, gas and smoke. Children of congenital anosmics that can smell often serve as the "nose" for that parent.

Scientists think that a mutated gene on Chromosome 18 might be responsible for isolated congenital anosmia. You can read the scientific paper here.

Thanks to Pauline Lipscomb and Marie Sherman for sharing their stories and their photographs (the one of Marie is from her high school years). Additional thanks go out to the Congenital Anosmia group on Facebook for allowing an "olfie" like me to participate as a community member.